Enough Already

I'm in a bit of a snippy kind of mood and those never lead to good posts, so a little unsure of how this will go.  Here goes nothing I guess.

I've had enough....

Now, let me start off by saying, Alexa is good, more than good really.  In fact, we had bloodwork this morning, lots of it.  Both liver and metabolic, which required being up at 5am to travel 1 hour for a 5 minute draw, instead of our local lab which is a 5 minute drive away. Liver labs have already been reported and they are absolutely wonderful.  I do not expect any surprises from the metabolic set, I think it is safe to say, her health is doing great.

Now, with all that, I am sure the rest of today's thoughts will make me seem, uhhhh, how do I put it? selfish, unappreciative, whiny, etc, etc.  Yes, today I am all of the above!

But sometimes, you feel how you feel and I think that's okay.  I have not forgotten how blessed we are.  I know that well.  But today I am tired...and.I am maybe just over it!

So, if you are not into hearing my whiny vent, you may want to stop reading at this point.  No offense taken, really.  I promise!

Alexa is doing really well academically.  Her latest report card was quite good, but I am finding that she does need to work harder than her peers to understand certain concepts and she is having some difficulty focusing, especially when her prograf levels(immunosuppression drug) are running slightly higher.  Attention issues was a huge concern pre-Ravicti as well as pre-transplant, and while it is much improved since transplant, there are still some difficulties.  This is not uncommon for kids with citrullinemia and also not an uncommon side effect of Prograf.  For some time this upset me a lot, but it is what it is and we will deal with it.

Last week, Alexa had a regular vision check up and to our surprise, we discovered that Alexa is quite farsighted, with one eye weaker than the other.  She requires glasses full time with quite a strong prescription.  

And I am not sure why, but this is the one that might have been the straw that broke the camels back so to speak.  

And it's not because she needs glasses; in fact we went to pick out a pair today and she looks so adorably mature and grown up.  It is not the actual glasses that I have a problem with.

My problems lie in the fact that it is just ONE MORE THING.  

One more specialist appointment among all the others to add to the mix and try to juggle into my new job and new schedule.  And have I mentioned that I am tired. 

Have we not dealt with enough? For once, could it just not be someone else? I mean, we already have the frequent blood draws, we have liver clinic, we have metabolic clinic, we have pediatirican apoontments, we will probably add in psychology for the attention.  Really? Do we have to add opthalmology?? Could this one not have been directed somewhere else? Could Alexa not have been spared just this once?

I know she has dealt with so much more and this is really nothing.  I know I am being petty, but in all fairness, I did preface my vent.  Fair warning was given....

So I guess, I am just over it. 

Enough already!

Low Muscle Tone??

I know, I know...This is the second dance video of Alexa this week.  Yes! I am THAT mom!

But bare with me; It is the last week of classes before breaking for the Holidays so teachers were keen on showing parents a sneak peek of what the girls have been working on for the big recital in June.

Almost 6 months ago, Alexa had her 1 year post transplant check up.  Among many, many tests was a physio exam to quantify how her gross motor skills were in comparison to the pre-transplant numbers.

Happily, all gross motor skills were excellent--Right on track for her age!

However, the physiotherapist spoke to us a bit about Alexa's muscle tone.  It is quite low--I guess 5 years of extremely restricted quantities of protein will do that to your muscles.  It makes sense I guess.  Anyhow, the physiotherapist gave us some exercises to work on and was pleased that she would be enrolled in dance classes to strengthen up a bit.

Alexa started dancing 3 times a week in September.  For many of the students this is their second or third year there, so Alexa had a little catching up to do. She is a little behind on the moves and some of the skills.

But, boy! This girl tries so hard! And practices so much.  In September, she could barely do a "bridge" on her own.  Three months later and look at how long she holds that bridge:  (at the end of the video)

Low muscle tone!  Take that!

Every day this little girl of mine, gives me yet another reason to be so proud of her.

It's been a crappy week

Alexa is fine! Great in fact!  She is perfectly happy and more importantly healthy.

This is not about her....

Our UCD community has had a rough couple of weeks.  And when one of us feels it, we all feel it. Probably because we have all been there.  In those same shoes.  All too often!  We know that it could have been us.  We know that it still could be us.  And it is scary and frightening and sad and infuriating all at the same time.

In these last couple of weeks, two babies have had to face a second transplant after complications arose from the first one just days prior.  Baby boy is in critical condition as his body adjusts to a new liver (again).  

This afternoon, I read those unfathomable words of condolences on Baby girl's facebook page.  

I did not expect that.  I was shocked.  I was devastated.  I was angry.  In fact, I still am.  All those emotions and more.

Today I was swiftly kicked back to reality.  The reality where no matter how easy Alexa made it seem, transplants are complicated and dangerous.  Where Urea Cycle Disorders do not come without its own set complications. Both are equally risky.  Neither is a choice any parent should have to pick between.  

And yet here we are....

After all is said and done; after all the questioning; after all the tears; all I can do is hold my daughter and count my blessings.

                        

So we have made it through our first illness..

Well kind of...we are just about over it!

Only July 31, I was all set to post that Alexa had made it a whole year without any hospital admissions.  In fact, she made it a whole year without any ER visits at all!  Crazy!  When you averaged at least one ER visit a month, going a whole year is a huge celebration!

However, the night before this, she got ridiculously bad abdominal pains accompanied by one random vomit.  Oddly enough, it must have been one of those 18 hour bugs, because quickly she was back to her busy happy self....

ER averted....yes! However, I thought posting the year milestone, might be too much of a jinx to ourselves and so I let that milestone go quietly by, celebrating to myself and thanking the Lord for the amazing year of health he has granted Alexa.

Fast froward to this week....

On Friday afternoon, Alexa came to me and said she was cold--it was 30 degrees outside (celcius). She was tired and wanted to nap--alexa stopped napping a year ago.  I knew something was up....felt her head and knew she had a fever....

Mild panic set in as I tried to gather my thoughts, thermometers, and fever relief medications....

It has been over a year since I went through all this with the pharmacists...

before transplant she could have advil and not tylenol, now she can have tylenol and not advil...Right? Or was it the other way around?  Crap 

And what dose does she get again? Crap, crap!

How high does her fever have to be before I call the on-call?  Damn it! I can't remember anymore...

And it is the Friday afternoon before a long weekend, pediatrician is gone, her nurses are gone, and the little transplant duotang that I once carried around EVERYWHERE in anticipation of this day, has slowly over the year become buried somewhere in my desk under a pile of bills and other paperwork.  Crap, Crap, Crap!

I placed a call anyhow, and because it was the Friday afternoon, of course, they were incredibly busy and took quite a long time to return my call.  

In the meantime, I found my trusty duotang, gave her the correct dosage of the correct medication (by the way, I had it right initially!).  Alexa was soundly sleeping and I was gaining back the confidence in my ability to handle this.  After all, it was JUST a fever!

But when you have a transplant child, a fever is never "just a fever".

Our doctor called us back, hears the temperature and tells us to get our behinds to the ER....Really? 

So off to the ER we went, putting an end to our 13 month streak.  

I do have to say though, as far as ER visits go, this once was one of the better ones.  Successful IV after one attempt and one more successful stick for blood( it was too much to get from the IV). 

They ran numerous blood test and cultures.  Alexa got a round of IV fluids, they started her on antibiotics in case it was bacterial and not a viral infection, and 3.25 hours later, we were discharged.

With continued tylenol and the antibiotics, she bounced back quite quickly.  The next day, apart from less energy than normal and a rash that she developed on her torso, she was doing well.  

Her throat swab came back positive for a bacterial infection, so she will continue her course of antibiotics for the full 10 days.  Tomorrow is the first day of school here.  She will be absent tomorrow.  The doctors want to make sure she has had enough days of antibiotics under her to ensure she is not passing the infection to the other kids.  

This makes me sadder than it does her!  

I guess our "first day of grade 1" pictures will have to wait until Wednesday.